I Think My Doctor Lied to Me

carrieh Member Posts: 146 Member

Hello Everyone,

Just back from a lung wedge resect. Doing fairly well. So...I think my colorectal surgeon lied to me? My story in a nutshell is colon cancer, surgery/ostomy..chemo and radiation...radiation almost killed me..failed surgery...hospice...sucessful surgery..ileostomy...months of hospitalization etc...ileostomy back to colostomy...a few other surgeries for gall bladder, mets to  lung...still throw up a lot...but now am just a little underweight and doing ok..eating..no feeding tubes anymore.

So I wanted to know if I could have a reversal...I have a teeny tiny piece of colon and about 2/3 of my small intestine left...not sure how much rectum..not a lot but there's a stump I believe. My surgeon told me he had never heard of reversing years later...its been about 2 years since orginal surgery. He also said my colon wouldn't even reach down to my anal area....OK...hang on a minute....

Haven't some of you had reversal after years? Don't people with NO colon get reconnected? Am I crazy or did he lie to me?

I will admit...he and I went through four life threatning times and he pulled me through...and maybe he thinks I wouldn't do well with a reversal or have too much scarring or who knows what...but I deserve to know my options. Even if I could be reconnected, I'm not sure I would do it...I go like 20 times a day...but aren't there little pouches they can make inside of your body to slow you down a bit?


Thanks anyone who answers or reads my rant





  • Nana b
    Nana b Member Posts: 3,030 Member
    I briefly looked through here

    I briefly looked through here but nothing popped out.  Here is a link


    http://www.colostomyassociation.org.uk/_assets/File/pdf/Bookets 2013 New Address/stomareversal_013.pdf


  • lp1964
    lp1964 Member Posts: 1,239 Member
    Dear Friend,

    I have all my colon and I have a permanent colostomy, no rectum. as much as I know about this even if they could reconnect you, having such a small amount of your colon, your rectum could not hold or control your bowel movement, because most of the water gets reabsorbed in the colon. That is why you have bowel movement, most likely watery 20 times a day. If all that went through the rectum everything would be out of control

    the best thing of course is to get second opinions until you are comfortable.

    wish you good luck.


  • fatbob2010
    fatbob2010 Member Posts: 467 Member
    Why reversal??

    What is motivation for reversal?  Are you otherwise healthy?

  • carrieh
    carrieh Member Posts: 146 Member
    I just started thinking about

    I just started thinking about what he said and it didn't add up. I don't know if I would do it if I could...honestly, I never want to go through the pain again. I do like to know ALL of my options though. I get tired of the bag sometimes, but I'm really also thankful not to hurt anymore :-) just curious if people without a colon ever get hooked back up...how it is for them..and if anyone has done it a year or two later? 

    Thanks for the comments guys :-) :-)


  • toddi1973
    toddi1973 Member Posts: 41 Member
    There is always a second opinion.i

    i just got released from hospital yesterday after a complete colon resection and attachment of a new formed j-pouch directly to the rectum. I had been turned away from three institutions down here in South Florida that had all come to the conclusion that the particular kind of surgery that I needed couldn't be done. Law and behold, even though there were a few complications, I woke up to a temporary ilieostomy which we will reverse in five months.

    you have gone through so much. But if this is important to you, keep pursuing ! 

    best of health,